Oh reflux!

I’ve been meaning to tell you that the doctors think that Samuel might (they don’t know for definite) have reflux.

When Samuel was in hospital in November the nurses noticed that he was arching his back (which he does sometimes when he’s a bit twitchy or sometimes when he’s having a seizure) and said that could be due to reflux.

Then a few weeks later when we had an appointment with the paeditrician and neurologist (who I adore and think are amazing) I mentioned the suggestion of reflux and both doctors said that Samuel probably has it as due to his epilepsy and disabilities he is a prime candidate for it (I can just see all you parents there nodding because you already know that). Samuel is over a year old and the doctors have never said that before. When we’ve been asked routinely by other professionals if he had reflux we’ve always said no as he’s never really dramatically vomited. When I put this to the doctors they said that he is probably swallowing the vomit back down (I have smelt his formula on his breath now and again). Right. Couldn’t we have been told this before? We are quite new to all this (and not just disabilities, we are first-time parents after all).

Anyway, he has medicine for it. We’ve now got to add infant Gaviscon to some of his feeds and give him Lansoprazole an hour before his first day feed. So the poor boy has even more stuff swishing about inside him.

I can’t tell you whether the medicine has helped him as it is impossible to tell, I mean we don’t exactly know whether he does actually have reflux. But at least he has it now if he does need it. He’s just had a wait a year for it.

Recent ramblings

WHAT DOES THAT MEAN?

NICU – Neonatal Intensive Care Unit (Sam spent 8 weeks there)
MIDAZOLAM – Samuel’s emergency medicine
JULIA’S HOUSE – Hospice which provides respite and play therapy (and lots of cuddles for Sam)
KETOGENIC DIET – Special diet which can help epilepsy
GASTROSTOMY – This is a button put into the stomach and all feeds and medicines can be given through it
CHLORAL HYDRATE – Medicine Samuel has at bedtime to help him sleep
SATURATION MONITOR (SATS MONITOR) – Used to monitor heart rate and oxygen in the blood
NASOGASTRIC TUBE (NG TUBE) – Tube that goes into the nose and down the throat and feeds and medicines can be given through it